January 14th, 2025 marks five years of being cancer free for Chloe, a previously rescued baby from New Life Home Trust (NLHT), from retinoblastoma (cancer of the retina). Adopted at age one, Chloe‘s mother noticed a white glow coming from the center of Chloe’s pupil. Having read an article about a similar occurrence, she sought medical advice. It was confirmed that Chloe was diagnosed with retinoblastoma.
After a gruelling 21 months of treatment, Chloe received the fantastic news in 2020 that there was no evidence of cancer. To mark Chloe’s five-year anniversary of being cancer-free, Chloe’s mother shares their journey in her own words—from the upsetting initial diagnosis, through to Chloe’s heroic fight with years of chemotherapy, radiotherapy, and other physically enduring tests, to living her best life as a wonderful eight-year-old!
Chloe’s Story
“I think back to December 2017, a one-year-old Chloe standing in front of me, looking sideways at a toy in her hand. The sunlight coming into the room through the window hit her eye at the precise angle that made it possible for me to see a white glow in the center of her pupil. I froze. In 2012, I had read an article in the Daily Mail about a mother who had seen a white glow in her son’s eye. When she consulted an ophthalmologist, it was confirmed her baby had retinoblastoma.
In the article, I read that when a photo of a child is taken using a flash, one of the eyes (or both) looks like it has a white glow or reflection in it. This is different from the usual “red eye” and is known as a “white reflex.” Armed with this information, my family and I decided to take photographs of Chloe’s eye with various phone cameras, both with and without flash and in different settings. Unfortunately, she was not cooperative and fought every time.
It was the December holidays, and most optometrists had closed for Christmas. Just after New Year’s Day, I managed to get an appointment with an optometrist who examined Chloe and insisted that it was not cancer. He asked for Chloe to return in a month’s time for another review, which we did, and even then, he again declared that it was not cancer.
But I couldn’t shake the feeling that this was serious. He referred me to a Vitreo-Retinal specialist and on February 14th, 2018, after an Exam Under Anaesthesia (EUA), Chloe was diagnosed with retinoblastoma.
The specialist advised that we seek treatment outside of Kenya urgently as retinoblastoma is a very aggressive cancer and can spread, one way through the optic nerve to the brain, where it becomes a new brain cancer tumour. When this happens, the prognosis is very poor.
Unfortunately, as I was not legally her parent at the time, I was unable to take her out of the country. The team from New Life Home Trust, led by Janet Mutinda, who had been supporting us through this all, arranged to have the adoption fast-tracked. We were able to get all the necessary documentation to take her to the UK to start her treatment.
Chloe’s Treatment Begins
Chloe began her chemotherapy treatment in April 2018 at Great Ormond Street Hospital (GOSH). During that year, I remember being in and out of the hospital, undergoing rounds of chemo, blood tests, physical tests, and EUAs. I remember lying with her in a hospital bed, her little body being poked by needles, nurses coming in and out all night, waking us up, and Chloe crying, Chloe vomiting. I remember rushing her back to the hospital when she was neutropenic, and her fever was dangerously high.
Chloe relapsed three times and in total she had six rounds of systemic chemo, seven rounds of inter-arterial chemo, one plaque radiotherapy session, several cryotherapy sessions, and many EUAs.
Getting The All Clear
In January 2020, she received her first no evidence of disease report. As we mark Chloe’s five years of being cancer-free, I am grateful for many things. I am grateful for Chloe’s healing. I am grateful for my family’s support, particularly my sister Sandra and the wonderful team at New Life Home Trust. I’m grateful to The Geary family who kindly offered us accommodation for about five months in 2018 and every time we travelled to the UK for Chloe’s treatment and reviews. We now have the privilege of calling them our good friends. My friends Eleanor and Agnes stood with us. The people who donated so generously in response to the plea sent out by New Life Home Trust were angels God sent us in those fearful days.
I am so grateful to the teams of doctors and nurses at Moorfields Eye Hospital, Royal London Hospital, and GOSH that treated Chloe and for the effective treatments that Chloe had.
I have learned so many things on this journey: the power of prayer, gratitude, and self-care. I have also learned about the power of information.
In my own small way, I look for every opportunity to spread awareness in Kenya of retinoblastoma. I was overjoyed when a friend published an article about retinoblastoma in Kenya’s Daily Nation newspaper and used some of my experiences in the article. A newspaper article can save a life! I was part of the My Child Matters – Wana Watunzwe (WAWA) project, a World Health Organisation-funded initiative run by the Kenya Hospices and Palliative Care Association (KEHPCA) to improve access to sustainable children’s palliative care services in Kenya for children with cancer and other palliative care needs. In this forum, I shared some of my experiences as a caregiver which I hope will help other caregivers. I am also a part-time volunteer at Faraja Cancer Support Trust.
A Bright Future Ahead
Chloe is now eight years old. She is thriving and is a happy, confident, chatty young lady and a social butterfly. She loves school and takes part in lots of activities including football, hockey, horse riding, cricket, and taekwondo. She is also a member of her school swimming squad and the school choir. In August, she had a review with her oncologist at GOSH who was happy to see her looking so well. She will continue having reviews with her consultant until she is 16.
It never ceases to amaze me seeing God’s hand at work, particularly in matching Chloe and me. I feel privileged to have been chosen to be her mother.”
New Life Home Trust couldn’t be more thrilled to hear the positive news of Chloe’s remission. We look forward to hearing more as Chloe grows and continues her life with her mother.